Teenager-ness and Autism

In a few short weeks I will have a teenager. A teenager with autism. Having a teenager (as I have heard) is challenging enough, but having one with autism might just be the biggest challenge ever. I am not expecting huge changes, but I am wondering what the future will bring for her. This child will have the age, body, and look of a teenager, but the mind of an 8 year old. (at best) This "teenager" will still watch Blues Clues, and love football, UNO, and getting tucked in by her mom, and brother. She will also still scream at me like no other, hit things with full force, cry like a baby when I don't give her the food she wants, and tell people..."my mom smacks me a lot." I have learned to roll with her differences, and laugh when others are staring at her like she is an alien.

My biggest fear, and sadness, is that this teenager doesn't have a group of girlfriends, and it's what she wants most in life. She isn't texting friends and making plans for the weekend. She isn't getting 30 phone calls a night to talk about "stuff." She isn't talking about boy crushes, or who's dating who, or even what is popular or unpopular at school. She doesn't want to shop all day and hang out with me at the mall (all trivial, but likely with teenage girls) She does have mentors at school, and they are wonderful young ladies. They do things with Phoebe at school, and go on Community Instruction outings, as well. It takes a strong, and mature girl to want to help out a child with autism. (and I love these young women for doing so)

These things mentioned are traits that I am most likely to miss out on. (Maybe that's not such a bad thing?) I am not sad for myself, but I am terribly sad for her, as she wants what ever teenage girl wants. Friends. My job in the next few months is to facilitate this for her. I need to work hard to figure out how to get her involved in new experiences, and to find some friends. This will be hard on everyone, but crucial to her well-being (and mine).

I will continue to help her as best I can, and fight both autism and teenager-ness. I'll wonder which is worse, and wonder if I'll ever get through it. But, no matter how hard it is on me...it's way worse for her.

Band of Mothers

This Sunday I will meet with 8 of my favorite ladies in the world. Each year, for the last 6 years out of 12 - we have been getting together for dinner or lunch to reminisce, get the updates about kids, etc. How do I know these women? When each of us had our first babies in 1999, we were grouped together by Beaumont Hospital in the suburbs of Detroit. It was called a "playgroup", and our first meeting was in July of 1999. (Each of our babies were from 3-5 months old.) We started meeting every other week at each of our houses, sharing milestones, stories and just generally enjoying each others company. We were all first time moms, and things were so new...it was nice to share in those experiences with such a great group.

It is with this group, that I noticed so many differences in my baby, as compared to the other babies. One of our girls brought her baby to group around the 6 month old age, and sat him in the middle of the room. He was up on his knees and just about crawling. At this age, Phoebe wasn't even sitting up yet, or had yet to roll over. She was "large, and big babies don't do things early" (Doctors words). I learned to live with these differences. She was chubby, cute, and entertaining. This went on for a few years...and I learned to add a year on to Phoebe's development time as compared to our playgroup friends. Phoebe was always sick, and had pretty bad asthma as a toddler. She was in and out of the hospital a few times, and had about 30 ear infections. These playgroup moms became my support, my laughter, my fun, and a great social outing for Phoebe. We had Halloween parties, Christmas Parties, Birthday parties, "mom's weekend away" (for headbands, drinks, laughter, shopping and bars) etc. It was such a fabulous time.

Most of us had 2nd, and 3rd children- and we had all been there for the ups and downs of pregnancy, showers, and miscarriages. This group was the FIRST group to hear of my divorce, and I could not have lived through it without them. They helped me pack, and move home. They kept my spirits up, and kept me laughing. The day I had playgroup and made the announcement that my husband and I were divorcing- I can remember on of my playgroup friends saying..."I NEED SOME CARBS...give me a bagel." (My atkins friend) I laughed at that, and still think of it. As years went by...the kids all started school, and we got together less, and less. This is just the nature of friendship, and the nature of having children, and having families. We kept up with the statistics...having some of us divorce, some of us move, lose jobs, get jobs, and hopefully someday re-marry? (that's a joke:)

As our children get older I hope that visits and outings will become more frequent. Facebook has helped us keep in touch, and see what these beautiful children have grown in to. It's still hard to believe that we have 12 year old children - that are close to being teenagers! I would not be who I am today without these ladies.

This Sunday we will get together and a few short hours will go by so fast, just like the last 12 years.

Love you ladies. :)

I've heard this before...

Sometimes I joke about living with Phoebe, and her autism. Sometimes you just have to laugh, because there really is no other way to cope. There are days I feel as though I am living in the movie "GroundHog Day." Autism is very routine, and very structured (so they say).

Each evening at 11:00 pm, Phoebe surfaces from her room looking very sullen and tired. Usually it's just to get a drink or stand and stare...but nonetheless it's EVERY night. I can count on that. In the morning, I am awakened to the sound of Phoebe knocking on my wall at 6:00 am. Sometimes, this time can vary, (5:30 am) but not by much. This is accompanied by the light in the hallway turned on. She asks..."can I have my apple now?" I get up and get her the apple and then she says..."it's too early to take a bath..right?", and I reply "no, go ahead." I lay back down for a few minutes until she comes out and says..."am I going to have to get Brendan up?" That's my cue to get my butt out of bed and begin the morning. These things are said on a daily basis- so if I seemed confused later about what day it is...you know why.

Once she arrives home off the bus, she says the exact same thing she has said for the last few years..."what are we doing tonight, and what's for dinner?" Some days I answer a normal answer like..."we are hanging out at home, and having chicken." Or some days to spice it up I'll answer "we are running a marathon, and having rat for dinner." This usually gets a very blank stare, or a crooked smile that says..."SERIOUSLY?" I have to correct myself or this might throw her right over the edge. (not to mention me as well) Then she usually follows up a reply..."I was good today can we go see Riley (her cousin)." I get the question about Riley every day, multiple times a day. I have made the rule that we don't see her during the week because of school and homework. This seems to keep Phoebe happy until the next time she asks.

Evenings are no different, and sometimes I say to my kids..."LOOK KIDS...BIG BEN, PARLIAMENT." (reference to European Vacation with Chevy Chase) Phoebe always has a 1/2 sandwich after school with a few pretzels and then throws a fit when she can't have dinner with us. I have tried every technique known - and she still gets mad as heck when she can't have 2 dinners. (Ignoring seems to work best.) Then she will go to her room, watch sports, and at 7 pm ask for her medicine so she can go to bed. This part of the evening can change here and there, but the words are almost always the same every night.

There are so many more that I could write, but you get the idea. Life with autism is "GroundHogs Day" over and over again. This morning on her way to the bus Phoebe said.."Mom, if I'm good today can we go see Riley?" and I replied "you're always good Phoebe, and no we can't." She just smiled.

Ideas- some good, some not-so-good

Turns out having presents out for the kids from mom wasn't the greatest idea after all. I thought maybe this year it wouldn't be a source of "obsession". I haven't done this in the past- and thought it should go well. Who am I kidding? I think that I have heard..."Can I open a present?" at least 500 times in the last 5 days. I just keep reiterating that on Christmas they can open their presents. If you give them the tools- they'll know what to do right? HA! Doesn't matter how many times I have answered this question- I still get it at least every hour- if not more. I even get the stare down- as if she is trying to figure out a better way to ask. Brendan has only asked 100 times- and he finally stopped asking. When I told him about the man at the Soup Kitchen who was more than excited, and grateful to get a "goody bag" filled with an orange, some snacks and a card, Brendan stopped asking. (Hence, he gets the idea) Phoebe seemed less than impressed with the story- ending with..."so does Santa come both Christmas eve and Christmas day?"

I love the holidays and I refuse to think that I am "missing out" because of the limits of autism. This would just lead to me being sad about the "what could be's". So, for now (and I'm thinking for a looooong time) I will be excited to drive her and her brother around every night after Thanksgiving looking at Christmas lights, making cookies that look like someone has mysteriously licked the frosting off everyone one of them, missing many Christmas parties, endure the long nights of getting up every hour, early rising at 4 am...and the general excitement of Santa and what he will bring. This I do for my family...autism and all.

I attempt to do these things with the best of intentions. However, I think I might be causing more anxiety than necessary. (But, who better to push autism to the limits than the mother of a child with the disorder?) If I never tried- how will I know if she can accept it? Or at least tolerate it- at best? My routine girl has a brand new teacher this month, and this has been quite the transition for her. She is giving this teacher a run for her money. Behaviors are at their worst, and the change has caused lots of uncertainly in Mrs. Routines life. In an nice attempt to give us options for holiday break, she sent home some fun activities that Phoebe can do on a wipe board, and a few social stories that can help with the long time off. These have been useful, and we keep reading them over and over. The other idea her teacher sent home was that in order to keep Phoebe busy..."have her read 30 minutes each day." God love this teacher for trying, but I laughed out loud. How about 1/2 a minute?? She doesn't do ANYTHING for a 1/2 hour. Ever. Good ideas...bad ideas. She'll get to know Phoebe over time and see the attention span...but I truly thank her for trying. (It does show she cares)

Well- I am off to sit for a while in anticipation of being up all night on Santa/Phoebe watch. Have a great holiday!!

Christmas and Doctors reports

I must first start off writing that recently my ex took Phoebe to see a "Behavioral Psychologist" that we both agreed might be a good idea. For once, I did not attend the meeting- and let him take her. We were looking for help on medications and how to treat behaviors and deal with them on a daily basis. Maybe, just maybe, this doctor would have something profound to say. The visit was in October, and I received the report on Friday. It was one page, and then attached to this one page were copied documents on how to give Time-Outs, use 1-2-3 Magic, and another common method for behaviors. Not to sound condescending, but REALLY??? The report was on how we need to implement these strategies. I'm not a genius, but I do have a degree, and have been dealing with THIS child for 12 years now. You don't think I've tried this? Time-outs have never worked with her, as she has the attention span of a flea, and 1-2-3 Magic was comical as she would consistently wait until I got to 3 to even attempt to do what I was asking- making me look ridiculous. I am not sure what I expected, but I guess I wanted this doctor to look at OUR daughter and her case, and then come up with a few ideas. If he couldn't, I would have been more impressed with a suggestion of.."take her here", or "we don't really know." As a parent of an autistic child who has been to Yale Autism Clinic, Central Michigan Behavioral Clinic, 2 Psychologists, 2 Psychiatrists, a Neurologist, and Endocrinologist, a Pediatric Gynecologist, and an ABA Therapist - to name a few...I think that I must have the answers, and it's time that I figure out what works best for her on my own. There is no exact answer when the spectrum is as large as it is.

HOLIDAYS:)

Most of us love the holiday season. I am one of those people. I love cookies (who doesn't), and parties (who are we kidding...I don't go to parties), and getting together with family. Our routine has been pretty consistent the last few years, and you'd think that would make it easier on our Phoebe. Then again this is Autism, and you thought wrong. Christmas Eve is a challenge, and that's all I need to say. It's like having a newborn baby all over again. Last year, I can remember her getting up every 1/2 hour looking for Santa. (Because my daughter can read fluently - I'll just say that getting up every half hour starting at 9...makes the whole evening quite a comedy) This year, I may sleep on the couch, so that at least I can just yell from there and she'll go back in her room instead of LEAPING up out of my bed, and running to the living room.

Christmas morning is like most of yours- it only lasts a few minutes. Even with the ages of my children, we still get done with presents in about 20 minutes. There is no "making it last", or "slowing it down." This is pretty common in American families. However, when you are doing this at 5:30 am...it can make for a very long day. As much as we want to make Christmas day a very special one, this house tries to keep the routine as normal as possible. We are at 6 days out, and I have started to prepare her for Christmas Eve and Christmas Day activities. Thankfully, we have a fairly low key day hanging out at Nana and Papa's with our family.

The other wrench is having no school. This always causes a challenge with our Autism...but we have a plan, and hopefully that will help. (One can hope) Also, a nice long visit to her dads help me relax and prepare for another semester, and take some time for me. I will take this time to try and enjoy myself and re-fuel for the next 6 months. Happy Holidays. :)

Holiday Fun?

The Holidays are a wonderful time. I have always loved being around family, laughing and having fun during the Holidays. While I grow more patient at Holiday time...Phoebe grows much less patient, and much more anxious.

Last year, on New Years I nearly had a nervous breakdown...in fact, you might say I did. The whole family made a trip to Traverse City. It sounded like so much fun! I hyped it up, I planned for a sitter...I did everything I was supposed to do. Yep.. I did everything I was supposed to, and I was thinking everything would go smoothly. However, Phoebe did not do everything I thought she should do, and it did not go smoothly for her. We stayed in a condo unit, next to my parents and down from my brother and his family. This alone caused Phoebe enough anxiety for a year. She wasn't sure which place to go to next. She was literally turning in circles, or sound asleep on the couch as a way of coping. We took the kids swimming, had a party, and all the kids had a good time...except Phoebe. She was stressed out, tired, anxious, and just a mess. My "vision" of a great New Years really had nothing to do with her "vision". I was really only thinking of my own fun, and my own selfish wants. (yes this does happen) Phoebe had quite a few meltdowns on this weekend- and so did I.

Needless to say, after many weeks of thinking and wondering what was wrong with her meds...it became clear. She's autistic. You can call it what you want, but she is on the spectrum. She can't handle unstructured events with many variables, and behaviors come out in full force when this happens. No school, snowy weather, possible fireworks, and schedule changes cause these unpredictable behaviors. Whether I want it or not, I have to structure my life better to make her life better. If any of you know me...this isn't easy. I am a "go with the flow" kind of girl. Well, at least I used to be.

This Holiday season I plan to do what we always do and get together with family. Phoebe is used to this, and finds comfort in all our families houses. Will I attempt to take her back up north? Not likely. Will I find something that she likes to do, at home, and within her comfort range? More Likely. Will she get up every hour on Christmas Eve? Yes. Will I be more tired than Santa on Christmas? It's possible. Will my life be more peaceful, if she is comfortable? YES. So, for this holiday season I will keep autism in mind (as if I would forget), and try to keep the structure for this child, because her happiness is my happiness.

TIRED and the Holidays

I get this question a lot..."Is your daughter higher functioning?" How do you answer that. Today, she was higher functioning because she only asked me for pretzels 60 times rather than 50. However, yesterday she had a meltdown at 3 a.m. when I refused to give her salami. So, I guess that would be a lower functioning day. To this autism mom, she is what she is. She is verbal to a fault, and can use words correctly in most situations. Does she always know what she is saying...I don't think so. Then other times- oh yes she does.

A few years ago, I took her to a clinic at Yale University. What the Social Worker said to me has stuck with me. He said..."this child looks to you for all the information in her world. Including how she should react to situations, what is wrong and what is right, and what her answers should be." To put it lightly, all I could think was...OH MY GOD. Really? I guess I knew that, but that's a lot of pressure. With "average" kids they look to you, but find their way for some things. This child would probably never do that. So, in our autism world let's break this down. When I'm mad- she's mad. When I'm sad- she cries real tears. If I'm hurt- she is quiet and afraid. She gets all her cues from me.

Yesterday, I had a 3 hour art class, and I painted and got the house ready for Halloween. I put together treat bags for school, and got everyone up and out to school. After class at 3, I raced home got everyone to help get the pumpkins carved and got everyone ready for trick or treating. Phoebe was a little undone. Then I got mad at her. She was so uptight, and unsure - and our routine was not the same. She was so anxious about the trick or treating. She made it to about 15 houses, and then wanted to go home. When I dropped her off with her Nana..all I could think was how much I'd like to be home. I wonder how much of my tiredness was wearing off on her? Halloween was exhausting, and fun...all at the same time. Look out Christmas...here we come. I'm going to need some 5 hour energy.